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Mama And Baby Both Celiac


veggiemama

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veggiemama Rookie

Hi,

I just wanted to introduce myself. I found out recently (within the past week) that my daughter and I are both celiac. She is almost 12 months old. She has had rashes basically since she was born. She is breastfeed, and I found out that wheat bothered her through my milk when I would eat wheat but I never thought it could be celiac. I did not know much about it.

Before knowing that we were celiac, I stopped eating wheat but then I started eating it again and her rashes came back. Again -- I never really thought more into it other than "oh she must just be sensitive to wheat right now"

All my life I have had digestive problems and I knew that eating wheat in particular really aggravated my stomach from time to time. I actually went wheat-free and sugar-free for a long time (I'm vegan) and felt better. But during the pregnancy is really when I started having problems. My midwife wanted me to eat "protein protein protein!" so I added wheat to my diet again. I ate bagels, sandwiches... not to mention other gluten containing grains.

After the birth, my stomach problems got even worse. I felt nauseated lot but I did not know why. Recently, I got food poisoning which was awful and when I started feeling better and was able to eat again, I started eating rye bread sandwiches, spelt pretzels and wheat crackers (before I knew I was celiac obviously) and I started to feel bad again. Now my stomach is so aggravated I can hardly eat without feeling nauseated and having stomach pain. Its probably been about 3-4 weeks since I've had gluten. Shouldn't I start feeling better? I've been living on potatoes. My next approach is drinking fresh raw juices because I know they heal the digestive tract.

I'm off all grains even ones that do not contain gluten, soy and all nuts. However, this is not a problem to me since I am not able to eat much of anything at the moment.

Any thoughts or suggestions will be much appreciated :)


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ItchyMeredith Contributor

Welcome! You came to the right place. This board is an amazing hub of celiac information. I have learned so much in my 8 months here. I too am a vegetarian celiac. I believe mine turned on during my first pregnancy but I only found out in June. We are trying to find out if my oldest is celiac too. Just curious- how did your baby get her diagnosis? It is wonderful that you found a doctor who was able to get to the bottom of this. Many parents struggle for years to find the answer.

My advice to a new veggie celiac is to:

1) Read everything you can about celiac and arm yourself with information. After reading just a couple of books you may find that you know more about celiac than your family doctor. 2) Also- stay active on here and feel free to ask questions. BabyCenter.com also has a board for parents of kids with food allergies. Celiac is not an allergy but that is where the celiac mommies go too. There is also a board called Vegiac for vegetarian/vegan celiacs. Open Original Shared Link 3)Get a few cookbooks. My favorites are The Gluten-Free Vegetarian Kitchen by Donna Klein, and The Gluten-Free Vegan by Susan O'Brian. I got both of these on Amazon.

Good luck with everything! You and your baby will be fine once you get adjusted to the diet. Message me if you have any more questions.

Mere

dandelionmom Enthusiast

I was going to suggest cutting out dairy then I realized you're vegan so that doesn't help! I wonder if you need to go back to the doctor for allergy testing to see if you're allergic to any of the foods you're eating.

I ditto the suggestion to check out the Vegiac site. I'm a vegetarian with celiac and it gets hard to think of what to eat sometimes!

veggiemama Rookie

Thanks for all your suggestions.

Is there anything that may be good to put topically on my daughters rashes until they clear up? She reacted to the gluten in my breastmilk when I was eating gluten-containing foods. She itches the rashes.... I have heard of putting diluted apple cider vinegar on the rash (as well as putting some in her bath). That seems to be helping.

missy'smom Collaborator

There is a skin condition associated with celiac disease called dermatitis herpetiformus(sp?) that is itchy. There is a cream they can prescribe for it. You can read about it here at the Celiac Sprue Association website.

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    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
    • Samanthaeileen1
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
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